Hi. I'm Steve - you've found my blog. I talk about my experiences with dialysis and transplants all while trying to live a "normal" life. A young man's view - tinged with humor.

The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Friday, November 5, 2010

Frustration....

I can't speak for everyone on dialysis, but I know for me a big part of being a dialysis patient is dealing with frustration.

Life, in general, is full of frustration but you add in the complexities of living with ESRD and being on dialysis and you've got a giant heaping bowl of frustration that you have to swallow every day.

Sometimes, what people don't understand about the disease is what's really frustrating. When I talk to people, a lot of times they say "What did you do?" when I tell them I have kidney failure. Or they imply that I drank and drugged my way to lost kidneys. Sometimes, there's a lot of judgement. Or people will often come up to you with some kind of holistic miracle cure - I've been offered so many snake oil pills and teas that will make you "feel better" but they don't realize that my kidneys are DEAD and unless you have some kind of medicine made from the blood of Jesus, you're not going to revive my dead kidneys. In fact, because I have no kidneys to filter out anything from my blood, if I took these herbal supplements or drank this strange tea, it would just stay in my blood and toxify me. Yay.

Or, my favorite, is when I say I'm still on dialysis and people say "Oh, you still have to do that?" Dialysis is rarely a temporary thing. In extreme cases, it can be - when people have some kind of acute renal shut down, but when your kidneys have atrophied and died, you're having some kind of renal replacement therapy for the rest of your life. It's dialysis or die, baby!

Or, of course, there is the transplant. But, again, highly misunderstood. A transplant isn't a miracle cure, but rather another form of treatment. When I had my first transplant, I often heard this...."Oh, but you're better now, right?"

"Oh, but your better now right?" is the nails on the chalkboard that ESRD patients have to deal with. People have this innate need for people to fully recover when they get sick. I can't blame them - part of it's love and concern for the patient, and part of it's concern for their own health and mortality. I suppose when you're "healthy", the thought of being "sick" is one the most mortifying concepts. I know it was for me before I got diagnosed. But seriously, in my chats with dialysis patients, a phrase we hate to hear is "Oh, but you're better now, right??"

Yes, frustration and being misunderstood. Also, frustration at the waiting. Sometimes being on dialysis feels like waiting to die. You're attached to this giant friggin machine, it spins your blood and fluids and pumps it back into you. Basically, you're this cyborg who can't move for hours on end, and you feel useless as shit when you're done. That's frustrating, especially when you're trying to live a life! And it's never ending.... you don't get a break. You don't get to say.... "Ah! A week off! I'm going to go dancing!" It's relentless, it's monotonous and it never changes.

I feel like I wait by the phone, too - though I honestly don't look for the "call" any more. But part of me hopes that every time my phone rings, it's someone to say "we've got a kidney.... get to the hospital...." It reminds me of the Greek Myth of Tantalus.... always sitting neck deep in a pool of water, but when I try to reach out to get a drink of water - it all recedes.

How do I deal with frustration? Heh. Writing helps. Telling jokes. Playing my guitar. Listening to my wife. I'm lucky - I have the most amazing partner in this. Not everyone's so lucky.

1 comment:

Ha! I love it. You're right though. "You're better right?" is grating. I'm positive I lost my previous job because they thought by having a transplant I was all better. Until I started going through rejection. Check it out on my blog if you want. I'm on Peritoneum dialysis. I can't really say I'm frustrated, more like bored. However, I know how you feel though.